May 23, 2017

Why I donated tissue. Giving hope to the community

Maureen's son Liam presenting on FSHD science
Maureen's son Liam presenting on FSHD science

In November of 2016 I underwent Scapula Fusion surgery in Baltimore, MD.  During that surgery I had the privilege to donate muscle tissue for FSH research.

The donation itself was relatively simple. The paperwork prior to the surgery was minimal and was mainly taken care of by the doctor’s office.  The procedure itself was included as part of my overall surgery, and did not cause any further pain or loss of mobility.  

Several months prior to the surgery June Kinoshita from the FSH Society reached out to me asking if I would be interested in donating muscle tissue taken from my surgery.  It wasn’t even a question in my mind. Without hesitation I committed to donating muscle. 

I was diagnosed with FSHD in 2011. My son Liam, then only 6 years old, was also symptomatically diagnosed.  Since that time I, like everyone else I have spoken to with FSHD, have been on a quest to learn everything I can about the disease and most importantly how to treat it, how to slow the symptoms, how to cure it. 

As a mother, I have not encountered any obstacle as frustrating and as upsetting as bringing my son to doctor after doctor, only to be told there is no treatment, there is no cure.  My only choice is to sit idly by and watch and wait for progression, and pray that the wonderful doctors and scientists come up with a treatment before his disease progresses. 

This is why I would not even call it a decision to donate, it was simply something I could finally do to be able to contribute to my son’s health.  In the past I have donated money which I know is of the utmost importance for the continuation of research.

Being able to donate tissue is something completely different.  It was finally something positive I could provide from having this disease. The knowledge that perhaps the tissue from my body will help a child, any child not lose their smile, or not lose the ability to raise their arms, or keep them walking fills me with such hope and gratitude. 

This disease can take away so many physical things, but it can also make us stronger in ways we didn’t know was possible. Helping others by donating tissue is a way to find strength in the midst of weakness. It is providing hope to our community.

Visit the FSH Society website for information on joining the FSHD Tissue Donation Registry.

Feb 22, 2017

We have cell lines!

Researchers at Fulcrum Therapeutics.
Researchers at Fulcrum Therapeutics.

We have exciting news! Your donations have funded the first recovery of FSH muscular dystrophy tissue from a patient who had surgery last November. Among the labs that received the tissue is Fulcrum Therapeutics, a Cambridge, Massachusetts biotech that is working on treatments for FSHD. Using this muscle tissue, Fulcrum has developed FSHD primary muscle stem cells known as myoblasts which are capable of being expanded and cultured in their laboratories for many uses. Fulcrum will use these FSHD myoblasts for disease characterization and early drug discovery activities. The company would like to make these cell lines available for wider distribution to other researchers. 

We now have nearly a dozen research labs that have applied to receive tissues through this registry, and many patients who have registered to donate tissue. With your continued support, we will be able to deliver their invaluable donated tissues to the world's leading FSHD researchers. Thank you!

You can read more about Fulcrum's work here.


Dec 5, 2016

First tissue recovery completed!

Dear Friends,

I am excited to report that this week, our national FSHD tissue donation registry completed the first recovery of muscle tissue from an individual with FSH muscular dystrophy, who underwent a surgical procedure two days ago. The tissue was delivered immediately to two superb scientists, one working at an academic institution and one at a biotech company. The donated tissue will help these researchers validate their strategies for treating FSHD.

For the donor, the gift was especially meaningful because not only is she affected by FSHD, but so is her child. I know that her donation was motivated by her urgent desire to help find a treatment for her son. Your donations have made it possible for this patient's most precious gift to reach its destination. I thank you from the bottom of my heart!


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